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hi joanne good to hear from you and marian i have left messages in australia boards too they seem to have more connection with each other, they certainly give more insight as to living life with cah and different difficulties it presents indicating that they have had more knowledge of this condition in the community for a lot longer.i was able to get information there from rosealie about research and studies on adrenaldectomy. this is where life would be controlled better with drugs minus the adrenal glands,which is what is been suggested for my daughter. i can send on this information to anyone via email address.
